The Whispering Is Over

At first women were too embarrassed to talk about breast cancer. Then they started demanding research into treatment. Today, women are mobilizing, insisting that the causes of this epidemic be addressed

"It's still me
living with Breast
Cancer," a self-portrait by Francoise & Denny Hultzapple. (c) 1998
Art.Rage.Us., The Art & Outrage of Breast Cancer, a program of the
Breast Cancer Fund. 1-866-760-TBCF
www.breastcancerfund.org

Looking at the history of breast cancer politics, you
might think women are slow learners. But when I was growing up, back in
the 1940s, you couldn't say “breast” in mixed company, much less
“breast cancer.” Incidence rates rose steadily after World War II, but
who knew? Breast cancer was personal, and frankly, embarrassing, not to
mention deadly. So you whispered about breast cancer.

As scientist Rachel Carson was writing Silent
Spring in the early 1960s, warning about the dangers of pesticides, she
concealed her own metastatic breast cancer from all but her closest
friends. Carson died of breast cancer in 1964, less than two years
after her book's publication.

Then in the 1970s,
Betty Ford, Happy Rockefeller, and Shirley Temple went public about
their breast cancer, and thousands of women rushed to have mammograms.
There the action stopped—until the late 1980s, when the AIDS community
offered an indelible lesson in the politics of disease. In San
Francisco, Elenore Pred paid attention to the outrage and the advocacy
of AIDS groups. Recurrent breast cancer had invaded her bones, and
after two close friends died of breast cancer in quick succession,
Elenore got angry. She was no stranger to politics, having campaigned
for civil rights and women's rights and against the Vietnam War. In the
summer of 1990, she and 11 other women with metastatic breast cancer
founded San Francisco's Breast Cancer Action (BCA).

Elenore
wrote letters and made phone calls to Washington and Sacramento, made
speeches, raised funds, and inspired others to join her in these
efforts. “We must stop treating this disease as a personal tragedy,”
Elenore told audiences. By Mother's Day, 1991, BCA and other breast
cancer organizations rallied 1,000 people in Sacramento, demanding more
research funding and more emphasis on prevention.

Elenore
Pred was only one of many angry breast cancer activists. In other
cities, breast cancer support groups morphed into advocacy
organizations: The Women's Cancer Resource Center in Berkeley, The
Women's Community Cancer Project in Cambridge, and the Mary Helen
Mautner Projects for Lesbians with Cancer in Washington, DC. Elenore
and her counterparts from across the country visited both the National
Cancer Institute and Congress in 1991 and asked hard questions of
policy makers: Why had breast cancer reached epidemic proportions? Why
were so many women dying? Why were women being treated with the same
harsh regimens their mothers endured?

Later that
year, these groups, along with other national and local organizations
formed the National Breast Cancer Coalition (NBCC). Within a decade,
NBCC's efforts boosted federal breast cancer research funding nearly
tenfold—from $90 million in 1991 to more than $800 million in 2001.

The
whispering was over. Breast cancer moved out of the closet and onto the
front page of The New York Times and into the network news.

In
January 1991, breast cancer also moved into my life. Like many women
newly diagnosed, I didn't know much about breast cancer. When the
surgeon said, “It's not good news—but you have an excellent chance for
cure,” I didn't know the difference between a statistical cure (living
five years after diagnosis) and a real cure (living a long time and
dying of something else). I didn't know that breast cancer was an
epidemic, striking more than 170,000 women each year in the US and
killing more than 40,000 of them. I didn't know about the political
influence of corporations on what we know about breast cancer and other
cancers. In the surgeon's waiting room, I read about advocacy groups
and was drawn into this movement.

Early advocacy
efforts focused primarily on treatment. Women diagnosed with breast
cancer wanted information on treatment and they wanted support. Urgent
and genuine, these needs largely eclipsed the importance of prevention
issues, such as finding the causes of breast cancer.

In
1992, after two mastectomies, political consultant Andrea Martin
started The Breast Cancer Fund (TBCF) in San Francisco, which
challenged the status quo, questioning the conventional wisdom that
mammography would solve the breast cancer crisis, pointing out that
detection does not equal prevention and exposes women to ionizing
radiation, the only proven cause of breast cancer.

In
1994, TBCF broke the news that the San Francisco Bay Area had the
highest rates of breast cancer in the world—and dared to ask why. Were
the high rates linked to environmental toxins?

Allie
Light and Irving Saraf raised similar questions when their 39-year-old
daughter was diagnosed with breast cancer that year. The San Francisco
filmmakers wanted to know why so many young women were developing
breast cancer, primarily a disease of older women.

“We
knew nothing about breast cancer,” Allie said, “but we went with her
for many second opinions, tape-recorded all office visits, studied her
pathology reports and saved every scrap of information.” That was the
beginning of Rachel's Daughters: Searching for the Causes of Breast
Cancer. In this documentary, eight women with breast cancer interview
scientists about their research into the known and suspected causes of
breast cancer, including radiation exposure, pesticides, and synthetic
estrogens. I served as co-producer of the film, which premiered on HBO
in October 1997. Four years have passed since the premiere of Rachel's
Daughters, but its scientific content remains accurate and compelling.

Fast
forward to 2002 and you can see the handiwork of Elenore Pred, Andrea
Martin, and other breast cancer pioneers. Federal research funding is
up. Three major new drugs for breast cancer have been approved by the
FDA since 1991—Taxol, Herceptin, and Arimidex. More low-income women
have access to treatment, thanks to the Breast and Cervical Treatment
Act of 2000. The Women's Health Initiative study confirmed that use of
hormone replacement therapy for more than four years not only increased
the risk of breast cancer, but also the risk of heart disease, stroke,
and blood clots.

These tiny islands of progress bob
in a sea of pink ribbons and corporate hype. Promotion for Breast
Cancer Awareness Month (underwritten by Astra-Zeneca, the maker of
breast cancer drug, Tamoxifen) focuses only on mammography, avoiding
any mention of pesticides (which the company manufactured until a
recent reorganization) or buying organic. Other campaigns invite you to
Race For The Cure, Drive For The Cure (!!), and Shop For The Cure.
Meanwhile, breast cancer rates continue to rise. The American Cancer
Society estimated that the number of new breast cancer cases would hit
205,000 in 2002 and 40,000 would die from the disease. Of the billions
of research dollars invested in breast cancer since 1971, less than 3
percent has been spent exploring environmental links. As Belle Shayer,
co-founder of Breast Cancer Action, explained: “We haven't been able to
get support for finding causes of breast cancer—or any cancer, for that
matter. Congress and the drug companies don't see the need for
prevention.”

Despite the paucity of research on
environmental carcinogens, two things are clear: 1) ionizing radiation
(for example, in medical x-rays) is the only proven cause of breast
cancer, which makes it essential to replace mammography as a detection
method, and 2) considerable scientific evidence links breast cancer to
the proliferation of synthetic chemicals since World War II. In
February 2002, The Breast Cancer Fund and Breast Cancer Action released
a white paper summarizing this evidence: State of the Evidence: What Is
the Connection Between Chemicals and Breast Cancer?

Meanwhile,
pollution has become personal. Biomonitoring studies (chemical analysis
of body fluids) show that all of us carry a body burden of toxic
chemicals. Rachel Carson described this toxic invasion 40 years ago in
Silent Spring. More than 200 contaminants have been found in breast
milk. Breast milk holds valuable information about human exposure to
toxic chemicals, some of which may contribute to breast cancer, but
unlike European countries, the US has no systematic program to monitor
breast milk. TBCF is working to change that.

At an
International Summit on Breast Cancer and the Environment held in Santa
Cruz, California, in May 2002, more than 100 scientists, activists, and
community representatives gathered to create a new approach to breast
cancer research and public policy. The top policy recommendation from
the summit mirrored TBCF's own priority: establishing a national
biomonitoring program that includes breast milk as a marker of
community health. Two California legislators have pledged to introduce
legislation establishing a pilot breast milk monitoring program in the
state.

The existing evidence linking chemicals and
breast cancer demands that we begin to implement the Precautionary
Principle in shaping public policy. This principle says that evidence
of harm rather than proof of harm should be the trigger for action.
Thanks to the Breast Cancer Fund and other organizations, in March
2003, San Francisco supervisors will vote on the first Precautionary
Principle ordinance in the nation to guide government purchases over
$50,000.

Rachel Carson was right: our health and the health of
the environment are inextricably linked. More than 85,000 synthetic
chemicals have invaded our air, food, water, and ourselves. The
lifetime risk of breast cancer is 1 in 8. The lifetime risk of some
kind of cancer in the US is 1 in 3 for women and 1 in 2 for men. And
cancer is a symptom of a larger epidemic of chronic disease that a
growing body of research is linking with environmental deterioration.
Research on the link between workplace exposures, household exposures,
and breast milk contamination must continue, but we must also take
precautionary action, based on existing evidence. We need to:

Phase out chemicals that cause cancer

Enact “sunshine” laws and enforce existing environmental protection laws to reduce the use of toxics

Offer incentives to encourage businesses to eliminate the use of harmful chemicals in products and processes.

No Paywall. No Ads. Just Readers Like You.You can help fund powerful stories to light the way forward.Donate Now.

Nancy
Evans, a health science writer, filmmaker, and environmental health
activist, serves as health science consultant for The Breast Cancer
Fund (see Resource Guide). State of the Evidence: What Is the Connection Between Chemicals and Breast Cancer? is available atwww.breastcancerfund.org